at OpenHelix

Kennedy fought for genetic non-discrimination

When Ted Kennedy had to run for Senate the last time, the call came out for Massachusetts Democrats to help with the signature collection for the nomination papers. I decided to help out with a drive one Saturday in Davis Square in Somerville. We are very liberal in general in Somerville, and I didn’t expect any problems. But the biggest problem I had was convincing people that yes–in fact–Ted did have to run again. For most of us it was as if Teddy had a standing appointment to the Senate and it was hard to believe he had to run again. Of course, after I explained this to them, most of them laughed and signed.

It will take scholars decades to work their way through all of the threads of legislation that involved our Lion of the Senate. But most recently I was following the Genetic Information Non-Discrimination Act, or GINA. As someone who spends most days looking in the genetic databases I knew both the power and the danger of this data. In the wrong hands this data could result in discrimination against anyone with a medical flaw–or even a suspected medical flaw–buried in their genomes. Especially in a time where obtaining insurance can be very difficult.

A photo I loved was provided by the Genetic Alliance when the bill was signed. Here is Ted Kennedy, with Francis Collins, and Louise Slaughter–all of whom worked diligently on this legislation. They shepherded it through a time when science wasn’t at the top of an administration’s priorities. They did the right thing for science, and the right thing for all of us.